Background
Hundreds of thousands of people with disabilities live in Israel today. Most people with disabilities are unaware of even their most basic rights. Of those who are aware of their rights, few know how to exercise and protect them. Becoming aware of one's rights and exercising them are acquired skills, which require both information and training. The fact that no training programs geared toward individuals with disabilities have been developed means that most of these people are denied their basic rights over and over again.
Attitudes about people with disabilities
For centuries and up until the present, society's attitude toward individuals with disabilities has been characteristically paternalistic; a person with disabilities is often viewed as weak and unable to care for his/her own affairs. As a result of such widespread preconceptions, many individuals with disabilities have been conditioned to believe that they are incapable of making independent decisions. They feel that others must advocate for them. The upshot of this cycle is that others make decisions about their lives without requesting their personal input or considering their wishes. This reality constitutes a blatant negation of the right of people with disabilities to dignity, equality and self-expression.
Following are just a few examples of the attitude of disregard for rights of people with disabilities:
Individuals with developmental illnesses are often sent to psychiatric institutions because the local welfare agencies have not informed them or their families that they have a right to choose to live in assisted living residences within the community. In institutions, residents do not have control over their daily activities and schedule. The staff decides what they will eat, when they will rise in the morning and go to bed at night, with whom they will share their room, what activities they will participate in, and even what they will wear. Residents are not consulted as to their occupational preferences, or about their opinions about dating and marriage.
Unemployment rates among individuals with disabilities are sky high. They are often unaware that employers are required by law to hire a certain percentage of individuals with disabilities, and also to make any necessary modifications for them so that they may be able to work in a given workplace.
Parents of children with special needs often keep their children out of the normative educational system because they are unaware that their children have the right to receive additional learning hours. Thus the children are denied their right to be mainstreamed within the normative educational system.
Self-advocacy kit
Bizchut works under the postulate that individuals with disabilities share the same rights as every other individual, including the right to make independent decisions. Bizchut is involved in a number of initiatives whose goals are to promote this right to self-determination.
Bizchut maintains continuous contact with educational, occupational and residential frameworks catering to people with disabilities, and acts as a civil watchdog to ensure the proper implementation of their various programs. Following a survey of such programs, including interviews with their directors, it became apparent to us that an overall plan for empowerment of people with disabilities was sorely lacking. The goals of such a plan would be to effectively inform people with disabilities of their rights and obligations in various areas of life, instruct them on how to become more involved in decision-making about their own lives, and supply them with the tools and talents needed in order to make decisions and exercise their rights. A quick comparative look at the situation in the United States shows that such programs do indeed exist in many states.
Bizchut has decided to act towards rectifying this deficiency. To this end, Bizchut is in the process of preparing a self-advocacy kit that will serve to inform individuals with disabilities of their rights and teach them how to implement and protect those rights. The kit will cover all areas of life, from the most private to those requiring the highest degree of community involvement. The goal of the kit is to provide its users with the most thorough information regarding their rights in every area, increase their ability to make decisions about their day-to-day lives, and to enable them to live more full and independent lives that reflect their own individual styles, hopes and dreams. In so doing, the kit is meant also to strengthen the user's self-image within society.
How will the self-advocacy kit be distributed?
The kit will be distributed in special education schools, in sheltered employment frameworks, and in supervised residence programs for people with disabilities. Bizchut will train a network of professionals from each of these frameworks who will be charged with instructing participants in the use of the kit and with supervising the ongoing use of kit materials.
Steering committee
Bizchut is currently recruiting individuals for a steering committee and a professional team who will be responsible for building the self-advocacy kit program.
The steering committee will establish the basic guidelines for the program, the areas on which it will focus, and its overall structure. In order for the program to treat the needs of its users as thoroughly as possible, the steering committee will include professionals from various disciplines including education, health, welfare and academia. The professional team will be responsible for developing the program itself.
Program structure
The kit will be structured in a modular and flexible format so that it may be tailored to the needs of its users, and serve as a relevant and helpful tool for individuals at various levels of functioning.
The kit will include units covering both personal and social issues. The units covering personal issues may include matters as mundane as how to choose one's food and clothing and as basic as how to choose an appropriate residence or occupational framework, and in which activities to participate. These sorts of decisions (which most individuals make each day without a second thought) are not a matter of course for many individuals with disabilities. For those living in institutional settings, a lack of this sort of basic decision-making is particularly apparent. In such settings, treatment of the residents as individuals is virtually non-existent.
Units in the kit covering social issues may include how to choose a flat mate, how to determine whether one wants to establish a romantic relationship and possibly marry, and determining whether one is capable of having and caring for children of his/her own. Even in these most personal realms relating to an individual's social behavior and identity, those with disabilities are often not given the right to decide for themselves.
The kit will give users access to information outlining their rights and responsibilities as well as ways to actualize those rights. Perhaps most importantly, it will aim to instill the basic conception that individuals with disabilities are fully capable of exercising and protecting their rights.
Training individuals to use the self-advocacy kit will be done in an individualized manner, focusing on the specific needs and level of functioning of a given population. Frontal learning, experiential learning, and introducing the user to the official bodies that can be of assistance are all strategies that may be utilized in communicating the kit material.
Pilot project
In 2001, a pilot version of the self-advocacy kit program was launched. Its goal was to determine the efficacy of the kit among those with developmental disabilities. The program was implemented in a special education school and in a sheltered employment framework for people with developmental disabilities. The main conclusions drawn from an evaluation of the pilot program were as follows:
- Individuals with developmental disabilities did not fully comprehend the implication of what a 'right' is.
- These individuals develop dependencies toward their caregivers to the extent that their trust in the caregiver is complete and unquestioning.
- Caregivers do not encourage independence and self-advocacy in those they care for, for fear that it may threaten their ability to control the person within a given framework.
Currently, Bizchut receives an ongoing stream of requests from directors of various programs around the country to allow them to introduce the self-advocacy kit in their programs, or to learn the principles of its application. To date (Autumn 2002), Bizchut has implemented the self-advocacy kit program in an additional framework for individuals with developmental disabilities. Staff members from an additional five schools have been trained in the implementation of the program. We are in the process of introducing the program in frameworks for people with mental illness.
